The ALS Association

Ice Bucket Challenge Progress

2018 Public Policy Priorities

Legislative Asks

  1. Ensure at least $10 million in appropriations for the ALS Registry at the Centers for Disease Control (CDC).
  2. Ensure at least $10 million in funding for the Department of Defense’s (DOD) ALS Research Program.
  3. Support increased funding for the National Institutes of Health (NIH) in FY2019, especially the National Institute of Neurological Disorders and Stroke (NINDS)
  4. Pass the ALS Disability Insurance Access Act (S.379/H.R.1171) to waive the five-month waiting period for patients with ALS before receiving benefits under Social Security Disability Insurance

Lead Initiatives

  1. Secure Appropriations for Key ALS Research
    1. National ALS Registry
      Provide $10 million appropriation to continue the National ALS Registry and Biorepository at the Centers for Disease Control and Prevention. The Registry collects data and directs a biorepository for people living with ALS and collaborates with the Centers for Medicare and Medicaid Services, the Veteran’s Administration and the National Institutes of Health (NIH). It is a critical driver of the search to find treatments and a cure because it connects researchers conducting clinical trials with people living with ALS in addition to funding its own research.
    2. Department of Defense
      Provide a $10 million appropriation to continue the ALS Research Program (ALSRP) at the Department of Defense (DOD). Research has repeatedly demonstrated that military veterans, regardless of branch or era of service, are approximately twice as likely to die from ALS than civilians. The ALS Research Program (ALSRP), funded as a part of the Congressional Directed Medical Research Program at DOD, provides competitive grants that are an essential component of efforts to identify treatments and a cure for ALS.
    3. National Institutes of Health
      Continue ALS Research at the National Institute for Neurological Disorders and Stroke and other Institutes at the National Institutes of Health (NIH). NIH spends approximately $55 million for ALS research with National Institute of Neurological Disorders and Stroke (NINDS) making the largest investment and four other NIH Institutes contributing the balance. The ALS Association works with Research!America to advocate for appropriate funding so that NIH can maintain and increase this level of commitment to ALS research.
  2. Waive the Five-Month Waiting Period for Social Security
    The ALS Association was responsible for introduction of the ALS Disability Insurance Access Act (S.379/ H.R.1171) in early 2017 to eliminate the five-month waiting period for Social Security Disability Insurance (SSDI) or Medicare. Under current law, people with ALS who qualify for Social Security Disability Insurance (SSDI) must wait five months before receiving SSDI and access to Medicare. The legislation, if enacted, would eliminate the five-month waiting period for people with ALS.
  3. Access to Home Health Services
    Achievable policy solutions are needed to improve access to home health services for people living with ALS. Federal government concerns about waste, fraud, and abuse of Medicare home health benefits for all seniors and misunderstandings about the scope of the benefit have significantly limited access for people living with ALS. In 2018, The ALS Association will continue to educate and advocate with the Administration and Congress on the home health needs of people with ALS as well as identify achievable ways to remove barriers through regulatory and legislative action.

Patient Advocacy

Represent People Living with ALS in the Health Care Reform Debate
The ALS Association continues to work with leading patient advocacy groups on legislation impacting people living with ALS as issues evolve. Examples include tax reform in 2017, specifically the fight to maintain the Orphan Drug Tax Credit and the Medical Expense Tax Deduction, but as Congress and the administration consider changes to the Medicare and Medicaid Program, the Association will closely monitor and work with other patient advocacy groups to examine emerging proposals to determine their impact on people with ALS and their families.

Have Questions? Contact Us!

Kathleen Sheehan
Vice President, Public Policy
Email: ksheehan@alsa-national.org
Phone: 202-464-8645

Abram Bieliauskas
Manager, Government Affairs
Email: abieliauskas@alsa-national.org
Phone: 202-464-8634

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